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Non Hodgkins T-cell Lymphoma

kymmc

Posts: 3
Joined: Feb 2003

Feb 27, 2003 - 8:43 am

Hi, My name is Kym and I am 41 in November of 2001 I was diagnoised with Non Hodgkins T-cell Lymphoma. My spleen was very enlarged and it was in my liver. I went through 5 months of (CHOP) chemo and then I had a stem cell transplant in May of 2002. So far so good. But I have never talked with anybody that has had T-cell lymphoma. Is there anybody out there that has survived this one?

MY HUSBAND HAS PERIPHERAL T-CELL LYMPHOMA. HE IS IN STAGE II. HE HAS HAS ENLARGED LYMPH NODES IN HIS CHEST.HE HAS HAD ONLY ONE TREATMENT OF CHOP. WE ARE GOING TO DANA FARBER CANCER INSTITUTE MAR. 7TH. HE JUST TURNED 50. WE ARE LOOKING FOR SURVIVORS ALSO. LET US KNOW IF YOU FIND ONE.

Hello Baddad. I recently battled T-Cell lymphoma (stage III), and I am glad to say that I am in remission and feeling better than ever. I was treated at Weil Cornell Medical Center in NYC and underwent CHOP chemo as well as a stem cell transplant. I would love to talk with you about my experience.

I WOULD LOVE TO TALK TO JNOVA! I AM 50 AND HAVE PERIPHERAL T-CELL LYMPHOMA STAGE II.I HAD ONE TREATMENT OF CHOP AND GOING TO DANA FARBER AND MEMORIAL SLOAN KITTERING FOR SECOND OPINION. I DONT KWOW WHAT TO EXPECT. I WOULD LIKE TO TALK WITH YOU ABOUT YOUR EXPERIENCES. MUCH OF THE FEAR IS NOT KNOWING. BADDAD

Hi, I read your reply. Sounds like we had the same treatments. I was Stage 4 when they finally found out what I had. I had CHOP for 5 months (once every 3 weeks) and then I had my stem cell transplant on May 2, 2003. I was very lucky and was able to use my own stem cells. I went yesterday for another check up and passed my CATSCAN. With each visit I get more hopeful. I would love to talk with you a share experiences.

Hi - -
I am writing this for my sister who doesn't have a computer, but has Stage IV T-cell lymphoma NK - phenotype unknown. She just started CHOP chemo and for her first cycle she had a couple of relatively bad days. Her question and mine is: do the side-effects get worse as the chemo continues, or do they pretty well stay the same ?

Hi kymmc...I have peripheral t-cell non-hodgkins lymphoma and have undergone various chemo treatments...including Hyper-CVAD and ICE...I am also using my own stem cells for a transplant. I am very worried about going for the SCT...I hope it is not as scary as I think...:-/

MY NAME IS RON. I WOULD LOVE TO TALK TO SOMEONE WITH SOME EXPERIENCE IN THIS. I AM GOING FOR MY SECOND TREATMENT OF CHOP NEXT WEEK. I REALIZE THERE IS A LONG ROAD AHEAD FOR ME. KNOWING WHAT TO EXPECT BRINGS LESS FEAR. IM ALREADY HAVING SIDE EFFECTS FROM CHOP. YOU CAN ALSO REACH ME AT WEEPLESSWILLOW@HOTMAIL.COM LOOKING FOR SOMEONE WITH INFO AND EXPERIENCE WITH THIS. THANKS

Hello Ron, My name is Jen I was diagnosed with aggresive stage 2 anaplastic large cell lymphoma in January of this year I have had 2 treatments of chop. If you want to chat my e-mail is jbowgett@cs.com

I'm so glad to find a group of people with a similar diagnosis. I have Anaplastic large T-cell high grade lymphoma, Stage III. I was diagnosed Feb 28, 2003. I have tumors in each arm pit, and several in my groin area. I began the CHOP chemo 2 weeks ago. I also receive ARA-C by intrathecal injection into the spinal fluid. These are given weekly. I'm scared out of my mind. And I'm so sick all the time. I would love to talk to all of you that are going through this! Be well.

Hi, I am new to the site. I was diagnosed with T-cell NHL in 12/2001. I underwent CHOP and RT and was in remission for a whole two months. Now, I am going to undergo a bone marrow transplant. My brother and sister are both a match. Is it a lot like what you went through? I am really concerned and very scared. I am alone most of the time and have too much time to sit and think. My husband doesn't like dealing with it so he works all the time and is not home until I am in bed. We never talk, and I am just so lonely through all of this. Please send me a message and help me better understand what I am about to face - ALONE.

YOUR NOT ALONE! I am 31 and was just diagnosed with aggresive anaplastic large cell lymphoma with T-cell phenotype, stage 2. I am undergoing chop, I have had 2 treatments.

I felt so bad for you when I read your message, I have a very supportive husband and I couldn't do it with out him. If there is anything I can do for you let me know or if you just want to chat my e-mail is Jbowgett@cs.com

I was diagnosed with anaplastic large cell lymphoma, null cell phenotype, (most likely T-cell origin or something that has to do with T-cells), about three weeks ago. I've heard that this is a rare lymphoma and usually affects older people. I am 26 years old. I just started my first cycle of "CHOP" chemo. last week. If anyone has any info. on this...please let me know. I am scared. My ALK-1 stain was negative...which means that my 5-year survival rate based on previous research is 40%. Mine is stage II E. My name is Mariette. My email is: DrugstoreRush@aol.com

DiDi
sorry to hear about the pain I'm sure your in. But I asure you your not alone. I'm going through this just as you are and I know that God is with me every step of the way. The world is scared and there feelings towards cancer are born out of fear. Forgive anyone who dos'nt understand what your going through it will help you more than you understand, and forgive your husband and pray for him. And remember that you are loved. Jesus gave his life for us. And if you would of been the only one alive he would have still done it. I know its all hard to face but keep faithful,and remember that love is your most valualble friend. Open your heart and remember your not alone. And I know that you don't know me but I love you. God bless and may you find happiness as well as healing in the name of Jesus Christ..........

Hi didi1031. My name is Mariette. I have Anaplastic Large Cell Lymphoma (aggressive NHL). I just found out yesterday that I need a bone marrow transplant. I am 26. I just did my first cycle of "CHOP" chemo. two weeks ago. I have a 13 cm mediastinal mass and a 5 cm tumor on my neck. I would love to chat with you about the bone marrow transplant. I am scared to death. I don't know what to expect and I don't know who to talk to. My e-mail is DrugstoreRush@aol.com

I am so glad you read you are in remission, and feeling better than ever.

I don't have T - Cell Lymphoma. I was DX with NHL in Sept 09 after my small bowel
perforated which was caused by NHL. I was treated with Rituxan only, and hopefully
in remission as of Jan 2011. My exact sub-type is Extranodal marginal zone b cell, NHL. I was treated at Montifiore-Albert Einstein Hospital in NYC. Supported by the NCI.

I have attended many conferences that Cornell, Columbia Pres sponsored. I am very familiar
with the doctors at both hospitals. I know they are one in the same. If you don't mind, can
you tell me which doctor you are seeing? Even though I am in remission, if things should
change, I would not hesitate going to Cornell, Columbia Pres for another opinion, or treatment.. Not sure if I can say we are lucky??? But, we do have at our disposal in NYC,
some great cancer hospitals. Without traveling long distances.

Hello.. My name is Melissa, and I'm 20yrs old... I was diagnosed with T-Cell non-hogkins lymphoma in Sept.'02... I had a tumor in my chest the size of a soccer ball and spots on my kidneys... I am happy to say everything is gone and I've been in remission since Dec.'02... I have 2 more weeks of chemo treatments and then I start radiation... I don't really know what to expect from the radiation so if anyone's already gone through this please let me know how it was...

I'm so glad to find a group of people with a similar diagnosis. I have Anaplastic large T-cell high grade lymphoma, Stage III. I was diagnosed Feb 28, 2003. I have tumors in each arm pit, and several in my groin area. I began the CHOP chemo 2 weeks ago. I also receive ARA-C by intrathecal injection into the spinal fluid. These are given weekly. I'm scared out of my mind. And I'm so sick all the time. I would love to talk to all of you that are going through this! Be well.

My husband was diagnosed with peripheral t cell otherwise undifferenciated. He has had CHOP ( CAT and PET were clear, but after 4 wk. of daily radiation another gland aoppeared. He has since had Ontak. Has tolerated tx well. He's 76. Other than decreased energy and joint pain, he is doing well. However he still has 3 nodules- all on the left axilla area on the left. Rrecemtly he has developed red patches on his face. Can this be cutaneous t cell. Like to hear from anyone with any information or just how they have done with the diagnosis. Any Dr. who specialize in t cell?

Hi my name is shane im 18 soon 19 and i was diagnosed with t-cell lymphoblastic Non-Hodgkin in late januruary of 05. Ive gone through 6 rounds of chemo so far out of 8 and im currently in remeission and im going to be having a bone marrow transplant soon. I was in stage 3 im pretty sure. Im doing the MD Anderson protocalor Hyper C-vad and it seems to be working extremely well. I cant say im a survivor yet but i will be and you will to with the right mind set you can do anything. email me at PIMPdaddycsc20@hotmail.com sounds immatuer but im only 18 and normal. Good luck to u.

Hi Shane, I haven't seen you post on here again, I have the same diagnosis Jan 2010 with T-cell Acute Lymphoblastic Lymphoma stage IV, 8 rounds of hyper CVAD gained remission, POMP maintenance relapsed 10 months later, 2 rounds of ICE now hoping for an Allo bone marrow transplant Feb 2012, really would like to know how you are going?
All the best to everyone on here :-)
Kerry 44 yrs
Perth, Western Australia

I have had 6 rare cancers in the last six years. I am in remission since a little over a year ago. I feel fine . I enjoy every day I am 63 with a suporting family. I caught this one early but was told this very difficult to treat. I have had parotiod, prostate, skin, two kinds of aggressive thyroid cancer and now lymphoma I forget how to pronounce. I feel good but worry over every little bump or peculiarity. Hang in there everyone. One thing I did notice when i started feeling sorry for myself I talk to God gave him my trust, I have a strong family and I have a good repore with a few Drs at cleveland Clinic.

Hello,
what kind of chemo were you doing during your treatments? My dad was diagnosed today with t cell aggressive nhl. He did the chop today and maybe the ice next time. It is so scary thinking only 20 percent are cured after the first six treatments. they also discussed having a stem cell transplant when he is done since it may come back. Three weeks ago they told us it is stage two but the lumps on his neck are popping up everyday. I am so scared and don't know what to think about all of this. I'm trying to stay positive but with this being so rare there is not a lot of info out there. if there is any advice that would be great!!
Thanks a bunch,
Sheila sa_williams79@yahoo.com

Hello,
what kind of chemo were you doing during your treatments? My dad was diagnosed today with t cell aggressive nhl. He did the chop today and maybe the ice next time. It is so scary thinking only 20 percent are cured after the first six treatments. they also discussed having a stem cell transplant when he is done since it may come back. Three weeks ago they told us it is stage two but the lumps on his neck are popping up everyday. I am so scared and don't know what to think about all of this. I'm trying to stay positive but with this being so rare there is not a lot of info out there. if there is any advice that would be great!!
Thanks a bunch,
Sheila sa_williams79@yahoo.com

Hello,
what kind of chemo were you doing during your treatments? My dad was diagnosed today with t cell aggressive nhl. He did the chop today and maybe the ice next time. It is so scary thinking only 20 percent are cured after the first six treatments. they also discussed having a stem cell transplant when he is done since it may come back. Three weeks ago they told us it is stage two but the lumps on his neck are popping up everyday. I am so scared and don't know what to think about all of this. I'm trying to stay positive but with this being so rare there is not a lot of info out there. if there is any advice that would be great!!
Thanks a bunch,
Sheila sa_williams79@yahoo.com

Please have your dad get a second opinion if it is at all possible. I suggest a lymphoma specialist at a large treatment center. This can be crucial to a good outcome. A second opinion saved my life. I hope that he is receiving R-CHOP, as CHOP alone has a so-so record against T-cell malignancies. Stay in touch.

Hey there,
Well, my dad has gone through 3 chemo treatments of chop and had a ct scan done. His oncologist is very pleased with the results and so we are going to do another 3 rounds of chemo (chop) and then do a pet scan. When he was diagnosed it was stage two (in his neck and armpit). Doctor said that most of the lymph node are gone or really small. He is scared of what will be next after the next three treatments. I'm guessing a stem cell transplant since t cell is more then likely to come back. My fiance got a job across the us so i'm waiting here until everything is in the clear. Hope everyone is doing well.
sheila

I was diagnosed with stage 4 Non Hodgkins T-cell Lymphoma when I was 19. I had chemo for 6 months and then a stem cell transplant. I got one day of CHOP, but complications immediately caused my kidneys to fail & I went into septic shock. When all was said and done, most of my colon was removed and I had a colostomy bag for a while. They started CHOP again soon after and all went well. And here I am 21 years old, alive to tell the story!

It is good news indeed that you are alive and, hopefully, well. These T-cell cancers are really something to contend with, but they can be survivable. Attitude is very important in the fight. Sounds like you have a good one.

Hey everyone! This is my first time posting to a board, so hopefully I'm doing this right :) My mother was diagnosed with NH Peripheral T-Cell Lymphoma in Sept 11' and has had 6 rounds of CHOP chemo. She had a Petscan in Decemeber that had shown a 50% reduction and we find out the results from another Petscan today. If it's gone down enough she will go in for a stem cell transplant on Feb 1st and radiation after the transplant is complete. We have never really been told what stage she is in but that it is centralized and that is a good thing (in her shoulder). Like others have said, it's difficult to find information on this type of cancer and would really love to hear your stories and opinions. I'm very scared and getting nervous (though I never show her that!) the transplant is getting so close.

My PTCL was an unspeificied variety, which is a rather large unknown group of T-Cell lymphomas. My oncologist did not use CHOP, as it has a poor record against T-cell lymphomas. If your mom is responding to it, great! I received dose intensive CHOEP (CHOP + Etoposide) followed immediately by GVD over four months. I immediately relapsed and was offered a clinical trial. It has put me in complete response and kept me there for almost three years. If your mom has a donor available for a transplant, good! There is none for me, but neither do I need one just now.

Since there is no recommended treatment for many of the T-Cell lymphomas, a second opinion (no matter how much you love your doctor) can save your life. I most highly recommend one.

My mothers PTCL is unspecified as well. We found out at the Doc yesterday that this recent scan showed no change so we are now holding off on the stem cell transplant and she having 2 rounds of ICE chemo with the transplant to follow. I guess this isn't terrible news because we want her as close to remission as possible before the tranplant, but it's not the news we were hoping for either.

You're right, we really feel confident in her oncologist and transplant doctor but a second opinion may be a good thing...anyone have any tips for making sure you're finding a really great doctor for a second opinion? I'm just not sure where to start again as the oncology/hemotology center she goes to is supposed to be the best in the city.

Please consider searching nationwide for a second opinion. I receive treatment in Seattle at SCCA (Fred Hutchinson), and I credit the knowledge and skill of my oncologist there with saving my life. No authority on earth can advise an oncologist what to use against PTCL, so it was a complete trust issue. He defeated my PTCL with a combo that I have not seen used anywhere else: 4 cycles of dose-intensive CHOEP (aka EPOCH) followed immediately by 4 cycles of GVD. I have been on non-chemo Istodax (aka Romidepsin) for almost three years now since relapse, and being NED, currently have no need of a transplant. In any event, there are no donors for me and receiving my own cells will leave me susceptible to relapse. So, here I remain.

However, I have survived two similar T-Cell Lymphomas for over seven years. It is crucial that a correct diagnosis be confirmed and that a T-Cell specialist is consulted with. Many oncologists/hematologists will use the CHOP regimen, but it is not very effective, and thjere is little time to waste. There are several better drugs/regimens out there. You may find more information here: TCLLfoundation.org/

I am a moderator at www.cancerforums.net and we have a good group of T-Cell Lymphoma patients there.

Hello! Sorry that you have to come here under these circumstances. Sadly, relapse drops the prognosis from poor to extremely poor. I hope that he is being seen by a research hematologist - and particularly one that specializes in T-Cell Lymphomas. If he is in the states, he can locate the closest National Cancer Institute designated comprehensive cancer center here: https://www.cancer.gov/research/nci-role/cancer-centers/find

As well, he may want to consider a clinical trial, as the newest drugs are less toxic and hold the potential to be much more effecive than what has been used in recent years. Clinical trials may be found here, by diagnosis: www.clinicalrtrials.gov/

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